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TREATMENT ENGAGEMENT AND RETENTION
IN PATIENTS WITH PTSD
Shannon Kehle-Forbes, PhD
March 20, 2019
PTSD Consultation Program
Lecture Series
AGENDA
1. Brief review of PTSD psychotherapy dropout literature
2. Introduction to DECIDE study and methods
3. DECIDE findings
1. The many similarities
2. Therapeutic alliance
3. Symptoms
4. Life outside therapy
5. Experience with treatment components
4. Implications
5. Questions
ACKNOWLEDGMENTSCollaborators
Princess Ackland
Kate Chard
Edna Foa
Heather Gerould
Alexandra Lyon
Laura Meis
Robert Orazem
Melissa Polusny
Paula Schnurr
Michele Spoont
Helen Valenstein-Mah
Susan Zickmund
Funder: VA Health Services Research and
Development (IIR 14-030)
Views expressed in this presentation are those of the
authors and do not necessarily reflect the position or
policy of the Department of Veterans affairs or the
United States government.
THE PROBLEM OF DROPOUT
About 1/3 of Veteran who initiate don’t complete PE and CPT Not unique to PE/CPT – trauma-focus of treatment not related to dropout
Some evidence that Present Centered Therapy (PCT) has lower dropout rates
Majority of Veterans who drop out don’t improve Dropout typically occurs prior to symptom change; those who drop out experience smaller
symptom reductions
There is evidence that a subset (about one-third) of non-completers may experience meaningful symptom improvement
Other negative impacts of dropout
Negatively impacts provider morale
Expensive & limits access to treatment
May increase stigma; decrease likelihood of future treatment seeking
SZAFRANSKI ET AL, 2017; GOETTER ET AL,, 2015; KEHLE-FORBES ET AL, 2016; BERKE ET AL., 2019
THE PROBLEM OF DROPOUT
Lots of study, but few consistent predictors of PE/CPT dropout
Younger age repeatedly found to be associated with fewer session
Accumulating evidence that group treatment associated with fewer sessions than individual
Greater severity of symptoms at baseline may be associated with dropout
Potentially modifiable factors have been harder to consistently identify
Many “one-off” findings of predictors (treatment credibility, readiness to change, etc.)
Recent qualitative work has helped to elucidate the issue
Interviews with 27 non-completers found therapy-related barriers (lack of buy-in to rationale / specific tasks, belief that the treatment wasn’t working, alliance problems, switching to other treatments) most commonly reported
No comparison to completers – unclear which of these are uniquely related to treatment completion
HUNDT ET AL, 2016; SZAFRANSKI ET AL, 2017; GOETTER ET AL, 2015; KEHLE-FORBES ET AL, 2016; BERKE ET AL. 2019; MEIS ET AL, 2019;
THE DECIDE STUDY
Qualitative study with these specific aims:
Understand reasons for premature dropout from PE and CPT from both the patient and the provider perspective
Identify factors that actively facilitate PE and CPT completion
Develop an intervention framework that can be used to improve retention in PE and CPT
DECIDE METHODConducted semi-structured interviews with national sample: 68 PE and CPT dropouts
60 PE and CPT completers
(33 providers of PE and CPT dropouts)
Purposively sampled for: Time of dropout (sessions 1-2 versus sessions 3-6)
Group vs. individual CPT
Race / ethnicity
Posttreatment PCL (for completers)
Veteran Demographics: 34% women
25% African American; 14.1% Hispanic
33% Vietnam era
60 PE interviews; 39 individual CPT interviews; 29 group CPT interviews7
METHOD
Interviews within three months of dropout, focused on:
Veterans’ perception of treatment experience
Early treatment (knowledge, expectations, and hesitations)
Process of dropout (ebb and flow of dropout thoughts and behaviors)
Treatment experience (reaction to components, therapeutic alliance, response)
Social influences and logistical barriers
Mixed inductive & deductive coding approach
Top level codes derived from conceptual model
2nd & 3rd level codes derived from text
Constant comparative method used to compare differences between completers & dropouts
DECIDE RESULTS
Top Level Codes:
1. Reactions to Treatment
2. Therapeutic Skill & Alliance
3. Symptoms
4. Life Outside of PE/CPT
5. Beliefs
6. Interventions
DECIDE RESULTS
COMMONALITIES ACROSS DROPOUTS
AND COMPLETERS
Liked
therapist,
caring,
genuine
Good non-
specific
rapport
Major & minor
life stressors
present
Perceived
good
support
from others
Perceived
worsening
Experience of
approaching
trauma content
Good
information
exchange /
liked being
“upfront”
Thought
therapist
was skilled
Logistical
barriers
(travel,
appt times)
Anticipatory
anxiety
What it was
like to do the
treatment
component
Understanding
of rationale
Reaction to
first session
Ambivalence &
efforts to
combat
ambivalence
Expectation of
effectiveness /
helpfulness
Expectation of
what it is
going to be
like
Apprehension
about
treatment /
worries
DECIDE RESULTS – THERAPEUTIC ALLIANCE
❖Completers’ therapists provided treatment-specific support; built alliance in context of treatment
Responsive to needs
Flexible in treatment delivery
Encouraged patient autonomy and control
Repeatedly encouraged staying in treatment
Provided “cheerleading” – pointed out progress to patient
❖Delivery was patient – not protocol – centered. Made patients feel heard, in control, and bonded to therapist
DECIDE RESULTS – THERAPEUTIC ALLIANCE
❖Specific strategies used to build rapport:
Flexible in talking when they would talk about things, could talk about them later
Emphasized autonomy: not going to make you do anything you don’t want to do, give breaks, encourage to take your time,
Reminding vet of reasons started treatment (e.g., family),
Analyzed/problem-solved “why don’t you think you could do this? How can we get this done?”
Didn’t engage in negative behaviors: didn’t get angry with patient, didn’t badger
Expressed faith in patient to complete, non-judgmental, humor, modeling (imperfect, therapist’s fears)
Checking in “are you okay with this”
DECIDE RESULTS – THERAPEUTIC ALLIANCE
“[He] left a lot of decisions up to me. I felt like he was taking my experience into consideration and not just his diagnosis… I felt like he allowed me to take part in what I
felt was going to work for me.”
-Completer
DECIDE RESULTS – THERAPEUTIC ALLIANCE
❖Completers & therapists were “in the trenches” together. Completers often referred to their relationship with their therapist as helping them push through tough times and complete therapy:
Mutual commitment
Not wanting to disappoint therapist
Wanted therapist to like him/her
Therapist invested in veteran so had to reciprocate
Easy to talk to, so helped veteran talk
Feeling that provider cared made veteran feel able to open up
Provider investment in the relationship; therapist cared
❖Came from rapport-building in context of treatment
DECIDE RESULTS – THERAPEUTIC ALLIANCE
“I just didn't want to disappoint him, that we were going through the treatment. I didn't do the homework one time because it was so rough, it was so difficult. And I apologized to him. And I told him that I was anxious about going that day… But he, again, made
me feel comfortable and he said I don't want you to ever be anxious about coming here. We're doing this for you.”
- Completer
DECIDE RESULTS – THERAPEUTIC ALLIANCE
❖Non-completers’ therapists were more rigid in their delivery, more strictly adherent to protocol
• Veterans felt as though their therapists didn’t know or understand them
• Cause them to question providers’ expertise
• Treatment seemed impersonal
• Lack of connection result of overly strict adherence
DECIDE RESULTS – THERAPEUTIC ALLIANCE
“Like I said, there was no personal questions about my symptoms and how I live. She actually still doesn’t know me.”
-Non-Completer
DECIDE RESULTS - SYMPTOMS
❖Almost all participants perceived that they were getting worse during PE/CPT –meaning of worsening differed
• Non-completers feared impact on functioning & safety
• Preferred pretreatment level of functioning to risk of worsening, “barely making it”
“I don't know if there's a way to get a person mentally back from all of that reliving. I couldn't—I knew I wasn't what I wanted to be as far as school and in my family life
after the sessions. It left me out there and I didn't know how to come back.”
-Dropout
DECIDE RESULTS - SYMPTOMS
❖Non-completers perceived worsening to indicate that the treatment wasn’t going to work, while completers viewed it as part of the process
“Once I started repeating them constantly I would wake up two, three, sometimes four times a week with nightmares… I assume that was supposed to happen.”
-Completer
❖Few non-completers reported symptom improvement• Increased insight / understanding mentioned for those that reported benefits
• Non-completers expected early symptom improvement & to feel better after session; lack taken as proof that treatment wasn’t working
DECIDE RESULTS – LIFE OUTSIDE PE/CPT
❖Non-completers feared the impact of participation on functioning, particularly relationships
• No noticeable difference in actual impact on relationships
• Non-completers’ support more likely to bring up negative changes seen in Veteran, completers’ support more likely to mention positive change
❖Non-completers more likely to let life stressors (major & minor) and day-to-day responsibilities interfere with treatment
• Become overwhelmed / unable to cope with competing demands
• Prioritize other responsibilities
• Sometimes used as an excuse or justification
DECIDE RESULTS – LIFE OUTSIDE PE/CPT
“I had surgery and it was just convenient not to go. It was like okay, well, I’ll just use that as my excuse.”
- Non-completer
DECIDE RESULTS – LIFE OUTSIDE PE/CPT
❖Type of social support differed between completers and non-completers
• Mirrored findings from therapists; support from completers was more directive, specific to PE/CPT
• Non-completer support was general emotional support
“Everyone just wants the best for me, and so whatever decision I made they back me up on it. Everyone told me, “It’s your decision. We’ll support you.”
-Non-completer
DECIDE RESULTS – LIFE OUTSIDE PE/CPT
❖Completers used concurrent treatment to stay in PE/CPT
• Entire care team aligned around completion
• Meds strategically used to manage symptom increases (especially sleep)
• Non-EBP therapist used to help manage competing stressors, manage symptoms, and provide support
“She would still make sure that I was in therapy doing the Prolonged Exposure… She was always making sure that it was going okay and that, you know, if I needed
anything that she’d be there.”
-Completer
DECIDE RESULTS – REACTION TO TREATMENT
❖Treatment participation was difficult for vast majority: “crying”, “brought up a lot of emotions”, “sickening”, “felt weak”, “felt embarrassed”
❖Completers better able to keep longer-term benefit in mind when approaching trauma content. Had “the better time” in mind
• Kept going long enough to see improvement, which strengthened resolve.
❖Non-completers wanted to stop at beginning stages of approaching trauma content; “Uncomfortable so I stopped.”
• Increased distress evidence that treatment was not working / rationale was incorrect
• Expectation of early symptom improvement & leaving session feeling better
❖Difference could be in understanding, support, higher tolerance for distress, and/or interpretation of consequences.
DECIDE RESULTS – REACTIONS TO TREATMENT
“By the third session I just kind of figured I’m not changed a lot and I don’t want the paperwork so I’m just not going to go.”
-Non-completer
DECIDE RESULTS – REACTION TO TREATMENT
❖Differences in reactions to structure• Non-completers felt too fast-pasted, too soon to talk about the trauma.
• Didn’t think it was long enough to address problems
• Used it to discredit treatment; provider must not know what they are talking about
❖Dropouts talked more about structure of treatment: “too focused on trauma”, “not personalized”, “repetitive and rigid”, felt like “class”, “scripted”
❖Nearly all completers liked their groups; non-completers were mixed
• Completers felt they were helping others, were challenged, liked the support
• Non-completers varied: helpful and provided support, didn’t fit in, group members were annoying, or they preferred one-on-one
DECIDE RESULTS – BELIEFS
❖No clear difference in understanding and buy-in of rationale
❖Non-completers who didn’t believe had specific reasons why not, why completers were more broadly skeptical
• Doesn’t fit with past experience; can’t differentiate from past treatment experiences
• Use early treatment experience to discredit rationale
• Timeline seemed unrealistic
❖Non-completers skeptical or promised level of improvement, especially in timeline
“It didn’t seem realistic. Ten sessions and I’ll stop doing that.”
- Non-completer
DECIDE RESULTS - BELIEFS
❖Non-completers’ worries about treatment more severe
• Trouble functioning, deep depression, suicidality / hurting oneself, being unsafe / trauma reoccurring, hurting others, losing control, relapsing on alcohol or drugs.
• Completers had similar number of fears, but had less severe shorter lasting consequences.
“[I was worried it would] make a wreck of me; I was already depressed and really scared of myself. Scared of my own damn demons.”
- Non-completer
DECIDE RESULTS - INTERVENTIONS
❖Non-completers and completers experienced ambivalence, symptom exacerbation, and other problems - but disclosure was selective
• Didn’t disclose because didn’t want to make therapist feel bad or be judged
• Non-completers did not disclose until decision was made – informing of choice; didn’t want to have their minds changed.
• Non-completers often were not up front about real reason for discontinuation
“Actually, I told her that family members have surprised me from Puerto Rico and they’re here, and that was a lie. Nobody was here. I just couldn’t go back.”
– Non-completer
DECIDE RESULTS – A SURPRISE
❖Sizable minority (10-15%) of Veterans who don’t think / don’t realize they have discontinued
❖Prototypical “confused” dropout: Long treatment history; very compliant in attending sessions and readily follow therapists’ treatment recommendations
Didn’t understand that PE / CPT is different than what they have been doing; often continuation with same therapist
Behaved the same in PE / CPT as they have in other treatments (e.g., no homework; focus on present concerns); didn’t understand expectations
Provider views avoidance and recommends terminating – Veteran either goes along with provider recommendation or doesn’t realize change in treatment approach
Many continue in another type of therapy with same provider
Did not have thoughts of dropping out prior to discontinuation
DECIDE - LIMITATIONS
❖Retrospective design
❖Not all completers improved – will need to examine outcomes in intervention study
❖Group experience differs from individual
❖Patient perspective only in this analysis
DECIDE - IMPLICATIONS
❖Developing rapport in context of therapy essential
• Patient-centered approach, make it work for specific patient
• Flexibility
• Patient control & autonomy
• Both parties share responsibility for successful completion
❖Eliciting expectations and perceived consequences of symptom change (worsening & lack of improvement)
• Challenge beliefs
• Develop plan for managing thoughts as they arrive and/or staving off perceived consequences throughout treatment
❖Build PE/CPT specific support (engage full care team / existing support system)
Please enter your
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and be sure to include your email address.
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Join via
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SAVE THE DATE: Third Wednesday of the Month from 2-3PM (ET)
Lectures for June through December will be announced soon.
UPCOMING TOPICS
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April 17 PTSD Diagnostic Challenges Matthew Friedman, MD, PhD
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